The Story of My Second Sight

Post date:

Tuesday, 25 July 2017

Vanessa Porter shares her experience of losing her sight and the impact it has had upon her life.

It’s now late afternoon and I am still waiting to see the eye doctor. Fidgeting like a child on the orange plastic chair, I am magnetically drawn to a white hospital notice board on the wall opposite me. Through my murky vision it glows like a beacon in the distance.

When I came in I could still read the letters, but now as I glance back they are clouding at the edges, the words eroding from the outside in. I notice that all the punctuation marks have evaporated, as though a zealous cleaner has wiped them all away. I reflect on this pragmatically, almost without emotion. I have become a machine, a human computer noting these minutiae shifts and reporting them factually and systematically. I am reporting regularly, but I am not processing this information yet because it is way too big to take in. All I do know is that every blink is washing away more of my sight.

It took three days in total for to me to go blind. That was back in 2012, and at the time I was a successful TV producer and mum to two small children living in South East London. Losing my sight was horrifying and had a dramatic effect upon me and my family. For a while I didn’t just lose my sight, I lost connection with the people around me, and with any hope of a future.

Over time my sight started to return, spluttering back into life. Grey wispy shapes appeared in front of me and lines jiggled on the horizon, but none of it made sense. I started to learn other ways of drawing information from my environment, other ways of hearing the more subtle cues my body was transmitting. I adapted to use the limited sight I had in the most remarkable ways, slowly allowing my world around me to reappear like a magician’s slight of hand.

During this visual rebirth I became fascinated with the inner workings of my brain – I needed to know what was happening and how it was that my vision was coming back online in this way. My curiosity grew as colour started to creep back into my life – reds whispered to me around corners, blues jostled for my attention. It was during one experience where a blue recycling bin literally burst into a sparkling, fizzing effervescence that I realised I had to find out about the miracles of my visual system for myself. It wasn’t an easy journey – scientists generally don’t just open their doors to the public, but over time I managed to convince a neuroscientist at Cambridge University to listen to my story.

That was the start of not only an incredible learning journey, but also a collaboration on an interactive EEG science art installation that translated my story of sight loss into a real tangible experience for the public. We invited members of the public to an EEG exhibition that we launched at the 2015 Cambridge Science Festival so they could hear my story and see how I used mindfulness meditation to overcome the trauma of my sight loss. The exhibition was so successful I was then invited to give a TED talk in Belgium, and Bloomsbury offered me a book deal to tell my story.

Losing my sight was traumatic but ultimately it has led me to investigate and understand my incredible visual system for myself. I now understand that even when I had no sight at all, I was still able to see ‘inside my own mind’, and that was a humbling realisation. Working with scientists we have adapted special biological algorithms that visually replicate what my embryonic sight was like, so others can see and understand my recovery stages for themselves. Seeing these images printed on a page, I realise how important my story is for not only those researching sight loss, but those who suffer from it themselves and their carers.

I didn’t get all of my sight back, and now live with visual disturbances and colour loss. These days I appreciate everything that I do see, and I take pains to notice the world around me in different sensory ways. You could say that losing my sight opened my eyes in other ways.

Further information

Vanessa Potter's brilliant book 'Patient H69: The Story of My Second Sight' is out now. You can buy your copy here and to receive 30% off the price of 'Patient H69' please enter PATIENT at the checkout